Wednesday, May 6, 2009

There's no place like home

Amanda is home and is doing well. I can tell by the questions we get from people that there is so much more explaining to do about her health, but I think I'll fill that in on another day. For now I'll just say that she is adjusting well to all the medications. She's a lot more weak and tired, but looks much better to us than when she was admitted to the hospital. I'm happy to have a doctor that keeps reminding us that we brought her in sick, they are making her better. Despite medication side effects, the chemo is working the way we want it to.

For now I'll just let you know how she's emotionally holding up. When I was told her diagnosis my first question to the doctor was, "how sick will she get?" Having been so deathly ill myself the past few months I was very fearful of having to watch my daughter endure the same misery at such a young age. I'm learning that the better question would have been, "how will she hold up mentally." We are going to have days she does not fell well. But we're finding the bigger challenge is helping her to cope. One of the medications she is on causes a lot of moodiness, something Amanda is already very good at. As the doctor put it, "Your daughter is going to have 28 days of the worst PMS ever! She will be demanding like she has PMS, she will crave food like she has PMS, and she will bloat up like she has PMS." This has proven to be very true! Being in the hospital made this much worse. She seems to be calming down now that she is home. But it doesn't help that one of her meds compounds the fact that she is already struggling to cope. She doesn't understand how she went to talk to a doctor and instead they held her captive for over a week and hurt her with needles and strange tests. That sounds scary even for an adult! She spent about three hours yesterday being very, very depressed. It's hard to watch and deal with, but it is understandable and we know that she needs to get those feelings out. She has received so many gifts that I was getting concerned about her getting too spoiled. I'm finding with a traumatized kid that the gifts, cards, and emails represent love and support to her. All the kind gestures have been so helpful and an excellent redirection to get her out of her sad places. A cancer survivor informed us that feeling loved means healing and every kind act reminds her of that. So thank you so much to all of you for your support. And as part of her moodiness, she happily bounced out of her depressive funk yesterday and went about the rest of the day as my shadow, demanding salty snacks and cookies along the way.

Just so you know, in an attempt to help her cope, as few things the child psychologist recommended we not talk about with her yet are the hair loss (should take a few weeks still) and duration of her illness, as she's not ready to handle it yet. I'm also adding the fact that she will be changing schools next fall -- she was recently accepted to a gifted and talented program at Mountain View Elementary. We also are not talking much about my pregnancy with her to try and keep things as focused on her as possible. Eventually she'll be able to adjust to all of these changes, but it's too much for her to comprehend right now.

As for Scott and myself, we're holding up and must thank everybody for the support we are receiving. The ward youth just showed up and did our yard work for us yesterday. Our family deeply sanitized the home for us to come back to (attacking 7 years of neglected dust and grime). All of their efforts easily equaled 50 hours of labor that we just cannot commit to right now. We have already received so much help with my health over the past four months that it is so touching to us that people have more to offer us. We come into this experience already quite weary as a family. I am still struggling with my health and we demand a lot out of Scott in caring for us girls. As a family, we are definitely facing our challenges. We cannot do this alone and know that all of you are going to help us get through this. We have people of so many different faiths praying and fasting for us. It is especially touching to me to have people that don't even know us doing what they can to think of us and support us. We believe so strongly in God and know those thoughts and prayers are helping us. We also know that although we can in no way repay everybody, your lives will be enriched for having faith and doing your best to help another person.


  1. If there is anything that you need let me know. I will hold up the fort at work. Don't worry about anything. You guys are in our prayers and the prayers of many of our neighbors. Even complete strangers are praying for you guys.

    Love Ya!!


  2. I am so glad you got home. Home is a wonderful place to be.

    I'm praying for you and your family. I put your names, (First names only) on an internet prayer circle I am on. There are litterly thousands of people of many faiths praying for you.

    For Amanda: Hang in there. Keep smiling, and know that God loves you and knows what you are going through. Have fun with your Webkins.

    Love, Wendy G.

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  4. My how you have grown since the last time I saw you. You are so pretty. You won't remember me, but I had the pleasure of working with your mother for a while and that was when I first saw you. Just wanted to say hello to you Amanda and all your family and will be following your recovery. Give your mom a hug for me. Thank you.

  5. Keep going kiddo! We love you all!!!!

  6. I just found out about Amanda yesterday and it made me cry reading through your blog. I can't believe what you all must be going through. Know that Amanda is in our thoughts and prayers.

    Andrea Robinson (Your Cousin)